Context Many countries have a shortage of kidneys available for transplantation.
Paying people to donate kidneys is often proposed or justified as a way to
benefit recipients by increasing the supply of organs and to benefit donors
by improving their economic status. However, whether individuals who sell
their kidneys actually benefit from the sale is controversial.

Objective To determine the economic and health effects of selling a kidney.

Design, Setting, and Participants Cross-sectional survey conducted in February 2001 among 305 individuals
who had sold a kidney in Chennai, India, an average of 6 years before the
survey.

Main Outcome Measures Reasons for selling kidney, amount received from sale, how money was
spent, change in economic status, change in health status, advice for others
contemplating selling a kidney.

Results Ninety-six percent of participants sold their kidneys to pay off debts.
The average amount received was $1070. Most of the money received was spent
on debts, food, and clothing. Average family income declined by one third
after nephrectomy (P<.001), and the number of
participants living below the poverty line increased. Three fourths of participants
were still in debt at the time of the survey. About 86% of participants reported
a deterioration in their health status after nephrectomy. Seventy-nine percent
would not recommend that others sell a kidney.

Conclusions Among paid donors in India, selling a kidney does not lead to a long-term
economic benefit and may be associated with a decline in health. Physicians
and policy makers should reexamine the value of using financial incentives
to increase the supply of organs for transplantation.

Compared with long-term dialysis, renal transplantation generally offers
a longer life span and a better quality of life.1,2 However,
nearly every country has a shortage of kidneys for transplantation. In the
United States, 50 000 individuals are waiting for kidney transplantation,
yet only 15 000 kidneys are transplanted annually.3 The
shortage is even more severe in developing countries. Despite India's having
4 times the population of the United States, Indian physicians transplant
fewer than 4000 kidneys annually, and a number of the organs are received
by non-Indians.4- 7

In the United States, a majority of kidney transplants come from cadaveric
donors; eg, brain-dead victims of motor vehicle crashes.3 In
India, no national cadaveric program exists, and virtually all kidneys come
from living donors.8 Because medically suitable
living-related donors are often unavailable or unwilling to donate, most transplants
are from living-unrelated donors.4,9,10 Moreover,
long-term dialysis treatment is federally financed in the United States but
not in India. As a result, only a small number of wealthy patients can pay
for dialysis treatment in India.8

Paying people to donate kidneys is often proposed or justified as a
way to increase the supply of organs and help the seller. In the United States,
providing financial incentives to families has been proposed as a way to increase
the supply of cadaveric organs.11,12 Proponents
argue that incentives such as paying for funeral expenses will supplement
whatever altruistic motivations are already present. However, legal issues
as well as concerns about weakening altruism and exploiting poor families
have so far prevented these proposals from being implemented.13,14

In India, the purchase of kidneys from living-unrelated donors has occurred
for more than a decade.4,5,9,15,16 This
practice is justified as a way to save the life of patients with no other
treatment options and simultaneously help a poor donor overcome extreme poverty.5,6,17- 21 Supporters
further argue that the seller has the right to choose the fate of his or her
kidney and that taking away this option harms the seller financially. They
also argue that there is little health risk to the donor from nephrectomy.21 Critics argue that purchasing kidneys amounts to
exploitation of the poor, that the poor do not overcome poverty as a result
of the sale, and that this practice prevents a national cadaveric transplant
program from being established.4,9,15,22- 32 Critics
also view kidney sales not as expressions of individual autonomy but rather
as acts of desperation by impoverished individuals.9 Moneylenders
may also be more aggressive in demanding payment from debtors who live in
areas where kidneys are sold to pay off debts.9 Middlemen
in particular are criticized as misleading potential donors about what a nephrectomy
involves and keeping a large share of the payment. In response to this concern,
some clinics purchased organs directly from donors.5,6 A
1994 law banned the sale of kidneys and further required that all transplant
centers have an authorization committee review potential living-unrelated
donations to ensure that donations were made out of altruism and not for commercial
reasons.33,34 Anecdotal reports
suggest that sales of kidneys continue despite this law.9,16,33,34 Commerce
in kidney transplantation also occurs in South America, the Middle East, South
Africa, China, and Pakistan.4,16,35

The value of using financial incentives continues to be controversial
despite some qualitative reports indicating that donors who sell their kidney
do not benefit and may actually be harmed.9,11,16,21,31,32,35- 41 We
sought to contribute to this debate by quantifying the economic and health
consequences of selling a kidney among a large sample of sellers.

Methods

Participants

The study was conducted during February 2001 in Chennai (formerly called
Madras), a large city of 6 million people that is the capital of the state
of Tamil Nadu in southern India. Adult residents of Chennai were eligible
for inclusion if they had sold a kidney. Because most of these transplants
are done in secrecy, written records are often unavailable. We therefore relied
on snowball sampling, a standard method for contacting difficult-to-reach
populations for face-to-face interviews.42 We
used newspaper articles and information provided by transplant professionals
to identify neighborhoods of Chennai where sellers resided. A team of 8 Tamil-speaking
research assistants identified participants by going door to door in these
neighborhoods. They also asked each interviewed participant for names and
locations of other people who had sold a kidney. Answers ranged from next-door
neighbors to people living in neighborhoods more than 15 km away. Each identified
neighborhood was revisited until no more eligible participants were found.

Interview

The research assistants explained the nature of the study, obtained
informed written consent, verified that participants had nephrectomy scars,
and asked the participants the following questions: why they sold their kidney,
whether wanting to help a sick person with kidney disease was a major factor
in their decision to sell, why they rather than their spouse had sold, how
much money was promised, how much money was received, whether they sold through
a middleman or directly to a clinic, how the money was spent, their annual
family income currently and before nephrectomy, their health status currently
and before nephrectomy, and what advice they would give to others contemplating
selling.

Participants also provided their age, sex, education, and date of nephrectomy.
Before the interview, participants were given 40 rupees (approximately $0.89)
as compensation for their time. They were told that they could keep the money
even if they did not want to answer any or all of the questions. Participants
were not asked to name particular physicians, middlemen, hospitals, or clinics
where the nephrectomy was done. Each interview was recorded on a questionnaire
and lasted approximately 20 minutes. The questionnaire was pilot tested on
a separate group of 19 participants, and their responses were used to refine
the questions. This study was approved by the institutional review board of
the University of California, San Diego.

Statistical Analysis

Data are presented by using standard descriptive statistics (mean, median,
range, and proportions). We used the paired t test
to compare family income before and after nephrectomy (Stata, version 6; Stata
Corp, College Station, Tex). Monetary figures were first adjusted for inflation
by using the Indian consumer price index and then converted from rupees to
dollars by using the exchange rate at the time of the interview ($1 = 45 rupees).43- 45 The poverty line
for Tamil Nadu is $538 a year for an average-sized family.46

Results

Participant Characteristics

Of 305 eligible sellers identified, all agreed to participate (Table 1). Sixty percent of female participants
and 95% of male participants worked as laborers or street vendors. Seventy
percent of participants sold their kidneys through a middleman, and 30% sold
directly to a clinic.

Reasons for Selling a Kidney

Almost all the participants sold their kidneys to pay off debts (Table 2). Food and household expenses,
rent, marriage expenses, and medical expenses were the most common sources
of these debts. When asked a separate question about wanting to help a sick
person with kidney disease, 95% of participants said this was not a major
factor in their decision to sell.

Forty-seven participants noted that their spouse had also sold a kidney.
The other 221 married participants (159 female participants and 62 male participants)
were asked why they sold rather than their spouse. The most common responses
by female participants were that their husbands were the breadwinners (30%)
or were ill (28%). The most common responses by male participants were that
they sold voluntarily (52%) or that their wives were ill or pregnant (19%).
Two female participants stated that they had been forced by their husbands
to sell a kidney.

Amount Received From Sale

The amount promised for selling a kidney averaged $1410 (range, $450-$6280),
while the amount actually received averaged $1070 (range, $450-$2660). Both
middlemen and clinics promised on average about one third more than they actually
paid.

How Money Was Spent

Most of the money received was spent on debts (60%), food and clothing
(22%), or marriage (5%). Only 11% was retained as cash equivalents (cash,
jewelry, bank deposit, or other investment).

Change in Economic Status

Although the economic status of individuals in Tamil Nadu has improved
throughout the last decade, many of the participants reported a worsening
of their economic status. Among all participants, the average annual family
income declined from $660 at the time of nephrectomy to $420 at the time of
the survey, a decrease of one third (P<.001).
The percentage of participants below the poverty line increased from 54% to
71% (P<.001). Of the 292 participants who sold
a kidney to pay off debts, 216 (74%) still had debts at the time of the survey.

Change in Health Status

Participants rated their health status before and after nephrectomy
by using a 5-point Likert scale ranging from excellent to poor (Table 3). Forty participants (13%) reported no decline in their
health after nephrectomy, 117 (38%) reported a 1- to 2-point decline, and
147 (48%) reported a 3- to 4-point decline. Of all participants, 50% complained
of persistent pain at the nephrectomy site and 33% complained of long-term
back pain.

Advice for Others

Participants were asked what advice they would give someone else with
the same reasons they had for selling. Of 264 participants who answered this
question, 79% would not recommend selling a kidney, while 21% would.

Time Since Nephrectomy vs Participant Responses

Increased time since nephrectomy was associated with a larger amount
received from selling a kidney and a larger decline in economic status. The
47 participants who sold a kidney more than 10 years ago received $1603 compared
with $975 for participants who sold within the last 10 years (P<.001). Participants who sold more than 10 years ago also reported
a 56% decline in annual family income compared with a 29% decline among participants
who sold more recently (P<.001). There was no
relationship between time since nephrectomy and reasons for selling, how the
money was spent, changes in health status, and advice for others.

Comment

We found widespread evidence of the sale of kidneys by poor people in
India despite a legal ban on such sales. In a 1-month period, we were easily
able to identify and interview more than 300 individuals who sold a kidney.
Selling a kidney did not lead to a long-term economic benefit for the seller
and was associated with a decline in health status.

Importance of Results

Our quantitative findings, along with those of previous qualitative
studies,9,16,31,32,34,35 undercut
5 key assumptions made by supporters of the sale of kidneys. First, although
paying people to donate may have increased the supply of organs for transplantation,
the financial incentive did not supplement underlying altruistic motivations.
Only 5% of participants said wanting to help a sick person was a major factor
in their decision to sell. Second, selling a kidney did not help poor donors
overcome poverty. Family income actually declined by one third, and most participants
were still in debt and living below the poverty line at the time of the survey.
Third, regardless of these poor economic outcomes, sellers arguably have a
right to make informed decisions about their own bodies. However, most participants
would not recommend that others sell a kidney, which suggests that potential
donors would be unlikely to sell a kidney if they were better informed of
the likely outcomes. Fourth, safeguards such as eliminating middlemen or having
an authorization committee did not appear to be effective. Middlemen and clinics
paid less than they promised, and the authorization committees did not ensure
that donations were motivated by altruism alone. Fifth, nephrectomy was associated
with a decline in health status. Previous qualitative reports suggest that
a diminished ability to perform physical labor may explain the observed worsening
of economic status.31- 35 Persistent
pain and decline in health status have not been reported in previous long-term
follow-up of volunteer donors in developed countries.47

Our findings have important implications for developing and developed
countries. In developing countries such as India, potential donors need to
be protected from being exploited. At a minimum, protection might involve
education about the likely outcomes of selling a kidney. Some have commented
that rather than protecting poor people, authorization committees simply provide
a cover for illegal cash-for-kidneys deals.9,33,34 Indian
legislators should consider modifying the 1994 transplantation act to prevent
the sale of organs under such cover. Physicians and policy makers need to
work together to develop alternatives for treating renal failure patients.
A national cadaveric program is needed, as is an increased emphasis on primary
prevention of common diseases that lead to kidney failure. Since paying off
debts was the most common reason for selling a kidney, social and economic
efforts to reduce or prevent indebtedness are also essential. In developed
countries such as the United States, our findings may give pause to efforts
to provide financial incentives to encourage donation. In particular, our
findings raise concerns about whether providing financial incentives may be
viewed by the public as taking advantage of poor families.14 If
perceptions about transplantation are adversely affected, such incentives
may actually lead to fewer total donations.

A majority of donors were women. Given the often weak position of women
in Indian society, the voluntary nature of some donations is questionable.48 In fact, 2 participants said that their husbands
forced them to donate. Because the interviews were generally conducted with
other family members present, other participants may have been reluctant to
mention being forced to donate. In the United States, women are also more
likely to be donors than men,49 but in both
countries, men are more likely to receive transplants.3,50

Limitations

Several alternative interpretations of our results must be considered.
First, our findings may simply represent general declines in the economic
and health status of poor people in India and not declines linked to the sale
of a kidney. However, although data on self-reported health status are lacking,
per capita income for Tamil Nadu has increased by 10% over the last 5 years
and by 37% over the last 10 years after adjustment for inflation.51,52 Additionally, the proportion of people
living below the poverty line has declined by more than 50% since 1988.53,54

Second, participants may have overestimated their economic and health
status before nephrectomy. Among poor people in India, virtually all financial
transactions are conducted in cash, and bank accounts are nonexistent. As
a result, there are no written financial records that can be used to independently
verify participant responses.9 Written medical
records are similarly lacking. However, participant responses to questions
about their current economic and health status would not be susceptible to
a similar recall bias. According to these responses, we can still conclude
that participants have debt, live in poverty, have a fair to poor health status,
and would not recommend that others sell a kidney.

Third, the adverse experiences of our participants may not represent
those of other sellers. For example, some sellers may have obtained such a
large economic benefit that they moved out of the low-income neighborhoods
that were the focus of our study. However, no interviewed participant mentioned
such individuals when asked for locations of other people who had sold a kidney.
In addition, our findings are consistent with those of other qualitative reports.9,16,31,32 These
alternative interpretations could be further addressed in studies involving
a comparison group, prospective follow-up, independently verified measures
of economic and health status, and additional geographic areas. Other topics
not explored in this study include the nature of any relationship between
participants and recipients, the reasons sellers failed to realize an economic
benefit, the reasons their health deteriorated, the reasons the amount received
for selling has declined, and the perspectives and roles of recipients, transplant
surgeons, middlemen, and donors' families.

Conclusion

The sale of kidneys by poor people in India does not lead to a tangible
benefit for the seller. The value of paying for donations must be reexamined
in light of these findings. Although patients with kidney failure deserve
access to optimal treatment, such treatment should not be based on the exploitation
of poor people.